Fusion in my lower back without knowing. Waking up with all my joints hurting? Is this the onset?

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Hi guys,

28m here.

I had a CT scan in September for a stomach issue. The scan showed that I had some loading on the right side of my intestine but also showed that, without me knowing, my lower vertibrate is fused to my pelvis. I wasn't worried about it at all when it came up in the scan, it just explained a lack of mobility in my lower back that I blamed on being tall. The gastroenterologist did however write that it could be early AS and referred me to a rheum. Again, i wasn't worried at all. it wasn't causing any pain (I was more concerned about my stomach issues which had kept me from my usual heavy exercise routine for the previous five months.)

However, about 5 weeks before Christmas, I had some new issues with my eyes. And a week later, I had a burning pain in my right elbow. Over the next few days, it seemed to spread to all my joints. It seemed to fade away after I was up and about but it seems to be getting worse.

The burning is still present when I wake in most of my joints (knees, elbows, wrists, hands) and pain wise, it's been fairly constant and has settled in my knees. I can feel a burning/pinching in them most of the time and it feels worse at rest, or when I first start walking, or if i stay on my feet in one place too long. Though sometimes I find a position where I feel okay.

In the past few days, I've started to have an increase in pain in my back and neck and I can hear a crunching sound in my lower neck and jaw.

This morning, when I woke up, my knuckles felt a little warm and mildly stiff to accompany the burning in a lot of my joints.

I've been backwards and forwards to the GP so I'm biding my time between appointments at the minute (can't really rush things with the NHS, no matter how much you want to know what's going on). Due to an ongoing issue with neutropenia, I have a blood test next week that was requested by a haematologist, which i believe will look for a wide array of different things. That's my next milestone before my first rheumatology appointment in March. My other blood tests have come back clear so far. So I really don't know what's going on.

My question is, do my symptoms tie in with AS? Can AS cause the burning pain in all my joints? I can even feel it in my toes at times. I'm not sure about fibro as it seems to be confined to my joints and no muscle involvement.

Symptoms in total are:

Burning in seemingly all joints (dies down during the day and moves around quite a bit)

All over crepitus

Sharp pain in knees

Pain in neck and back seems to be present during the day now also.

Hair has been shedding a lot, inc eye-lashes etc

Additional:

Dry tongue (tongue feels sandy and if I sleep with my mouth open, it sticks to my teeth. No sign of yeast)

Dry eyes

Gastro issues

It'd be greatly appreciated to hear if anyone has had any symptoms like this? The only thing that I have to go on at present is that "possible early AS" reference.

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6 Replies

  • Posted

    I would say you definitely have all of the symptoms of AS and the condition will flare and cause pain and fatigue. It will then pass and you will feel better. There are blood tests that will be done to confirm your diagnosis.

    For now hot presses ( can be bought in chemist) will help with the pain - rest - exercise and above all get a good physio to help prevent further fusing.

    There is a range of AS treatments that you can try once you know for sure but these suggestions should help in the meantime.

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  • Posted

    Hi Jay,

    Not sure how to answer. I had (and have) most of your symptoms (e.g., gastro) and some others (I think that you have enough to add more to the list), but I also consulted 4 leading rheumatologists (2 heads of the departments including, lots of wasted money) and 2 good neurologists and they all said that the burning sensation and pain in knees are not related to AS. It's hard to argue with someone who seems to know what they are talking about. It's harder to argue with your own body. If CT showed that you have AS, then you have it. It’s not the end of the world if you receive an early treatment. I hope that we will find the answers. I am certainly looking for some. Good luck with your appointment. Hope that you will feel better soon…

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  • Posted

    Hi there, you do seem to have a lot going on just now,which is frustrating. I am 55 now,but diagnosed at 26. My two main symptoms were iritis and lower back pain especially on waking. An xray and bloods confirmed AS.I have never been pain free since,but you learn to make the best of things and keeping moving is the best drug. I have never experienced burning sensations, more stiffness really everywhere and tiredness constantly, no loss of hair or dry tongue or gastric probs tho. Maybe some more tests will get u some answers. Good luck
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  • Posted

    Hi there

    Your at the same age as when my disease hit its peak - mine started at 17 but 28 was the worse - I am 50 this year.

    I was aware that the knees and other joint could be involved but here are other form of arthritis like Psoriatic Arthritis that are more likely to affect he jaw than AS - then again the eye issues can be AS.

    Personally I would start with unravelling the tummy issue with some experimental diet changes - most of the arthritis research points to gut imbalance and / or infection being involved.  

    Docs like to pigeonhole the diagnosis - but I think we are all slightly different.

    PsA also has similar genetic basis with HLA-B27.

     

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  • Posted

    Sorry Jay, wonders of autocorrect - in the previous answer I meant to write that I had most but not all of your sympthoms, gastro and some others (tongue, eyes) not being one of these... AS does not always show itself from the beginning. I was treated for RA for years before it was decided to do the AS CT test. I am H-.. negative so the blood tests is not the only indication. The back pain or screening definitely are. The back didn't bother me that much at the time and the big "boom" came few years after the diagnosis - somewhat similar to your case. What you are experiences sounds like a mix of AS and other related autoimmune problems.. I hope that the Drs will have some answers. Make sure to bring a list of your sympthoms with you. And maybe someone to accompany you to the appointment. Anything - even dry skin may help to finalize your diagnosis. Good luck.
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  • Posted

    I was dx'ed about 3&1/2 years ago with AS after a smart rheumy asked for some background info and did a blood test. I'd asked him what the treatment was going to be and he replied, "Well, let's see first WHAT we're treating." That's got to be the most intelligent answer Ive yet been given. My ailments began way back when I was 21 and pregnant with my first-born. All of a sudden, my back was hurting and I would wake up some mornings unable to walk or even get out of bed. I was young and figured it was just the excess weight of the baby and all. Nope. I saw a chiropractor for a while and he did help. But, every time I turned the wrong way, back to him I'd have to go for another spinal readjustment. Sciatica, he said. Over the years, joint pain here and there, back pain, gastro issues.. My only eye problems occurred when I left my contacts in too long, causing burning, redness, itchiness, nasty-smelling pus. Yeah. It's gross and I'm a lot better about changing them now. I don't think any of those were iritis. The pain isn't only in my joints. It's also possible to have pain wherever ligament meets bone. I'm proof of that. My youngest daughter had been complaining of ankle, foot pain as far back as age 8. So, I had her osteo do an HLA-B27 test and, she's positive as well. Along with her complaints, she's been dx'ed as well. Poor kid. She's only 19. She cried cuz she's seen what it does to me and sees her own future of it. U knkw? It is genetic, after all. Neither of my parents are alive now, so it's not possible to see which side it came from, but I have a sister with it, and suffers with colitis, as well. Our other sister, who passed away last year may have been positive also, but she didn't have AS. She had Crohn's disease. Boy, oh boy. It's just not been our decade. If u r dx'ed, why don't u subscribe to SAA mag, also. I do and they're very informative. There are webinars and q&a sessions a good deal of the time. It's a fine magazine. And it's not expensive at all. Ok? As for medicines, there's Humira and other biological a which may help. There's a new one, who's name I'm unable to recall at the moment, but it starts with "C", I believe. I take Duexis for the inflammation and morphine for the pain. The doc had to switch me from Oxycodone last year when it stopped working for me. He says the morphine will eventually stop, as well, at which time he may put me on the oxycodone once again. Who knows, one of these days, maybe they'll figure out the cause and find a cure. Till then, all we can do is hope and to keep as active as we can and keep up-to-date on any news on the subject. Take care. I hope u find a treatment that works for u, and soon.
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